Rare Disease Day 2018

Today is a big day for us spoonies.

It is the official Rare Disease Day, an observance held to raise awareness for rare diseases and their impact on the lives of patients.

While the purpose of today is to spread awareness for diseases and disorders that affect only a small percentage of the population, I’d also like to take this time to say a big thank you to the spoonie community for making me realize that there is hope, especially during the worst of my years.

Thank you for doing the best you can with what you have and where you’re at and inspiring me to do the same.

Please take a moment today to validate yourself for the progress you’ve made and for the strength and courage you exhibit despite your daily struggle.

I’m ever so grateful to have found to have found this community. You serve as a reminder for me that we are in this together. Thank you for being you, for sharing your story and spreading awareness for all things invisible to most eyes.

Keep going one day at a time!

Friends and family,

If you’d like to show some support and help share awareness, log on to rarediseaseday.org, click get involved and download the material which you can then share on social media. Alternatively, drop me a DM and I can share some material with you.

Love,

Manasi

#showyourrare #showyoucare

#rareillness #rarediseases #awareness #2018 #february28 #rarediseaseday #ehlersdanlos #ehlersdanlossyndrome #eds #hypermobility #pain #brainfog #migraine #dislocations #sublaxations #fatigue #health #mind #body #inspiration #motivation #onedayatatime #love #support #community

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A box from the past

#rarediseaseweek #2018

Just yesterday, I found a box filled with all my design stuff which I hadn’t seen in many years. It seems I had forgotten about it and left it with my dad because I wasn’t ready to accept my new reality (and discard anything) and nor was I able resist it. I was experiencing the most horrible internal conflict of all time

To hold on or to let go.

My heart knew well that I needed to let go because I had fought enough and my body was changing. But my mind wouldn’t let me.

Holding on would mean disrespecting and dishonouring the one and only vessel I had for the rest of my life. I had to learn to accept it for what it is but how could I let go of all the things I loved, planned and wanted so much? I was suffering in every way possible.

I knew I had to pause but it was hard to put away my dreams and aspirations for a long period of uncertainty, of not knowing and having answers. And that was scary. But I did it any way because I could no longer neglect the messages from my body.

So when I decided I was ready to jump off the cliff, leave my full-time job, learn to live on my own and put my body first, I told myself I’d deal with this box when I am able to see my past as just one part of my life and not a reflection of my worth . Leaving the box behind, I remember feeling as if a burden of expectation to be the “perfect one” was lifted off my shoulder and at the same time, a heavy sense of grief towards my old self engulfed me.

Who am I without my dreams, I thought.

I know nothing off this path I have carved and imagined. I will be lost. I am lost. And what if I am never found again? What if, despite all my effort and desire to leave my old self behind, I can’t do it? How will I live from here, with the burden of having and wanting to be perfect and knowing that I was born in an imperfect body?

Does honouring my body, which feels like the right thing to do, equate to failure?

Will I be a failure in everyone’s eyes?

Am I a failure in my own eyes?

Here I am now, all set to let go of this box and its contents because they don’t serve the present me.

Maybe it all made sense to some extent then, at the age of 20 and in that once healthy body. I knew nothing more. All I knew came from old, expired programming that I grew up with and around. Today, I believe I am a better version of myself and I’m proud of how far I’ve come.

Of course, my past has served a purpose; it lead me to this day. It taught me the importance of tapping into my inner strength, finding courage to do what is right for the sake of my body, mind and soul without letting the external factors lead me into believing that what I knew was the only truth.

Today, I understand that those around me need not understand me, and that it doesn’t matter if one thinks of me as less but it can be disastrous if I ever let myself think I am not enough. Because I am. And while my path is new and least travelled, it reflects a truer version of myself. It is taking me to a place of peace with my body. I believe and I’ve noticed that this internal shift brings me closer to a life of joy and purpose, one where I wake up everyday knowing I’m making a difference whether or not it is visible to whole wide world and where I live each day as gracefully as possible.

Here I am now,

ready to let go of this box,

both literally and figuratively,

and make space for the new.

With a heart full of gratitude and a lightness, I am ready to give this part of my life a complete closure because I had already said goodbye a long, long time ago.

#chronicillness #ehlersdanlos rarediseaseweek #ehlerdanlossyndrome #hypermobility #EDS #rare #illness #2018 #awareness #pain #suffering #fatigue #brainfog #past #lettinggo #memories #interiorarchitecture #goals #dreams #aspirations#acceptance #health #mind #body #soul #purpose #healing #love

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Wake up tomorrow, look around, say a word of thank you for the things you have. Take a deep breath, close your eyes and say thank you for people who are still in your life; for those who have showed up for you. Walk to your mirror and say thank you to the person you see. Make a promise to yourself that you won’t settle for any less than what you need. It doesn’t matter who says what. It doesn’t matter who “settles down” at what age, or achieves what when you know you’ve chosen a different path, one that is least followed, understood and accepted. Look inwards, for you know what is best for you. Look inwards, for you’re filled with love you’ve tired to find outside. Look inwards, for you’ve once given away too much love that you now owe to yourself. Look inwards first, always.

#inwards #settle #society #selflove #selfcare #love #path #home #friends #family #thankyou #gratitude #valentinesday #celebratelove

I haven’t been updating my Instagram or blog much lately and I don’t feel great about it because I really haven’t been writing much. Writing, for me, has been healing. I generally write a lot, whether or not I share my writings with anyone, but I do need that time and space to just be with myself.

Unfortunately, I haven’t been able to sit with a pen and paper in my quiet sanctuary where I pour my heart and soul out onto the paper. I know for sure that as my safe space starts to come together, and as my self-care routine becomes my primary focus once again, I will spend more time writing and sharing again too.

In the last two weeks, my ability to respond appropriately to my surrounding dropped drastically. It only makes sense, given that I have been dealing with too much at once. After sitting with this thought for a while, I realised that responses were coming from a place of fear and a sense of instability.

In 2017, I was once again required to make a hard choice for (not because) the sake of my health. Nonetheless, it seemed like the right thing to do and I’ve been okay with it. However, the physical of transition became so real in the last two weeks, it started taking a toll on me. I’ve been desperately trying to put things in place quickly so that I can finally let my body rest. The fear of what would happen if this transition caused my health to deteriorate even further worried me to an extent which reflected in how I responded to things around me.

I keep reminding myself that one of my strengths is and has been in my ability to adapt to the most challenging of circumstances.Unfortunately, though, I do have a tendency to be a little harsh and less compassionate with myself. Possibly a pattern from the past.

The truth is, it is extremely natural to freak out when things are moving too fast around us. This is how I see it: Transition = change = temporary instability = temporary disruption of routine = an opportunity to create a new, more present one = ability to transform & grow.

Over next couple of weeks, my goal is to allow myself the time and space to adjust. There is no need to figure out ten things at once. Some things may require my energy and others will sort themselves out.✨